I See You, Even on the Hard Days, #1

My dear one,

I have been wanting to write to you for a while now, and I finally decided today was the day. So here I am, pulling up a chair, taking my cap off for a minute, and just saying what is on my heart.

I know you did not ask for a letter. I know you did not send away for this. But I want you to have it anyway, because I think there is a version of you, maybe the version that has been sick a long time, or the version that was just diagnosed and is still catching her breath, or the version that is worn out from explaining herself to people who do not get it, who needed somebody to simply show up. Not to fix anything. Not to lecture. Just to show up, stay a while, and remind you there is still plenty of good in this life of yours.

So that is why I am here.

I do not know exactly what kind of day you are having as you read this. Maybe it is one of the hard ones, the kind where your body woke up already tired, where your joints ache in that deep way that does not have a polite name, where you have done the math on how many spoons you have left before noon and the number was not good. Maybe your heart has been racing since you stood up to brush your teeth. Maybe you had to cancel something again, and you hate canceling, because it feels like proof that you are unreliable, when really it is just proof that you are honest about your own limits.

Or maybe today is a good day. One of the ones where the sun feels a little kinder on your skin, your body is cooperating for a stretch, and you got to laugh at something small and silly. I hope for a lot more of those days for you. And when they come, I hope you let yourself enjoy them fully, without waiting for the other shoe to drop.

Either way, I want you to know something plainly, right at the start of this. I see you. Not the version of you that you show up at work, or the version you show your friends when you say "I'm fine" because it is easier than explaining EDS, or POTS, or the many ways your body has learned to go sideways on your plans. I see the real one, the one who is doing more, with less, than almost anybody around her understands, and who still finds reasons to smile.

You do not have to translate yourself for me. I already know, and I already think you are doing a fine job.

I know a lot of folks carry complicated feelings about the word father. Maybe yours was absent, or hard on you, or so worn down himself that you felt like one more thing on his list. I am not here to compete with anybody's story or take anybody's place in your life. I just want to be the kind of presence that maybe you needed and did not get enough of, the kind that shows up glad to see you, celebrates the good days right alongside you, and does not flinch when you are struggling.

Here is what I want you to know about how I plan to show up in these letters.

I will not tell you to just have more faith and your body will heal. That is not how any of this works, and it is a hard thing to say to somebody who is already doing everything she can. Your illness is not a faith test you are failing.

I will not tell you to try harder or push through a body that has real, physical limits. I know EDS is connective tissue that does not hold the way it is supposed to. I know POTS can make your own heartbeat feel like a threat. I know MCAS can turn a trip to the grocery store into a puzzle to solve. I know the fatigue that comes with ME/CFS is not the kind of tired a good night's sleep touches. I am not going to make light of any of that.

But I also will not let us stop there, because your life is not only the hard parts. There is laughter still in you. There is warmth you bring into a room. There are small joys, a favorite song, a good cup of coffee, a soft blanket, a friend who gets it, that are real and good and worth celebrating right alongside the struggle. Both things are true at once, and I want to hold both with you.

I want to say something honest, because I do not think enough people say it plain. There is real grief in living with a chronic illness. There is grief for the person you thought you would be at this age, for plans that changed, for friendships that quietly faded because you could not keep up. That grief is real, and it deserves to be named rather than brushed aside.

But grief is not the only guest at your table. Right alongside it sits gratitude, resilience, and even joy, if you leave room for them. You have found ways to keep going that plenty of people never had to learn. You have discovered which people in your life are the real, steady ones, and that is a gift many folks never find out. You have likely learned to treasure small comforts, a warm meal, a good nap, a kind word, in a way that people who have never been sick often overlook entirely.

You are allowed to grieve this life and still love this life. Sorrow for what has been lost and genuine delight in what you still have can sit together in the same heart on the very same day. I am not going to hurry you past your grief, and I am not going to let us wallow there either. There is too much good left to notice.

And when the sadness feels heavier than usual, please know it is not weakness to ask for more help. A counselor, a doctor, a trusted friend who checks in on you. Reaching for help is one of the strongest and wisest things a person can do, and it often opens the door right back to hope.

If there is one thing I want you to carry out of this first letter, let it be this. You never have to perform for me. Not strength, not a good attitude, not "doing fine." I am not going to love you more on the days you manage a smile and less on the days you cannot get out of bed. I am not keeping score.

So many people in your life, even the ones who love you, need you to seem okay so that they can feel okay themselves. That is a heavy thing to carry on top of everything your body is already carrying. With me, you can set that weight down. You can tell me the real number of spoons you have left, and you can also tell me about the good thing that happened today, the funny thing your dog did, the meal that turned out just right, the nap that actually helped. I want to hear all of it. Your joy matters to me every bit as much as your struggle does.

I want to be honest about something else. As I write these letters, I am going to keep pointing you back to God, because I believe He is the steadiest thing either one of us has, and because He is not only a comfort in the hard moments. He is also the giver of the good ones. Every laugh you have shared, every sunrise that lifted your spirits even a little, every small mercy on a hard day, those came from Him too.

There is a verse that has been on my mind since I started thinking about this letter. It comes from Psalm 139, and it says this.

"You have searched me, Lord, and you know me. You know when I sit and when I rise; you perceive my thoughts from afar. You discern my going out and my lying down; you are familiar with all my ways. Before a word is on my tongue you, Lord, know it completely." Psalm 139:1 through 4.

I love this passage because it is not about performance, or faith strong enough to earn healing. It is about being known, fully and completely, in the hard hours and the good ones alike. God was already there in your 3 a.m. worry, and He was already there smiling along with you the last time you laughed until your sides hurt. He does not love you more on your strong days. He simply delights in you, all the time, exactly as you are.

That is the kind of presence I want to offer you too, in my own small, human way. Not perfect, not able to fix your body, but glad to know you, glad to celebrate the good with you, and steady enough to sit with you in the hard.

Going forward, I will write to you about specific things. The days your body says no and you have to cancel plans again. The fear that comes with a racing heart. The lonesome feeling of a life narrowed down by triggers you cannot predict. But I also plan to write about the good stuff. The small wins worth celebrating, the joy of a good pacing day, the peace that comes from finally being believed by the right person, the simple comforts that make a hard life sweeter. I will try to speak honestly into both sides of this life, the weight and the wonder, without pretending either one is the whole story. And I will always close with a prayer, because I believe prayer is one way we hand everything, the hard and the good, over to Someone bigger than the both of us.

You can read these letters in order, or skip ahead to the one that matches your day. There is no wrong way to receive a letter from someone who loves you.

If you take nothing else from this first letter, take this. You are not too much, and your life is not only a hard one. You are a person carrying something genuinely heavy, and you are doing it with real courage. You are also a person who still laughs, still notices beauty, still loves deeply, and still has plenty of good days ahead. Both things belong to you. Hold onto both.

I am not going anywhere. Not on the good days, and there will be many, not on the flare days, and not on the days in between. I will be right here, cheering for the wins big and small, and steady beside you through whatever comes. I will be writing the next letter, waiting for you whenever you are ready to open it.

You are seen. You are loved. And there is real hope waiting for you, today and every day after this one.

Love, Dad

A prayer for you today.

Lord, thank You for knowing every part of her. The pain she carries in her body, the grief she carries in her heart, and also the joy that still lives in her, even now.
Thank You that You delight in her, not because of what she accomplishes, but simply because she is Yours.
Where her body is weary, be her strength.
Where her heart is heavy, remind her of the good gifts still all around her.
Give her rest for the parts of her that ache, and give her laughter and light for the parts of her that are ready to feel joy again.
Surround her with people who show up the way You do, steady and glad, on her hardest days and her happiest ones.
And let her feel, even now, that hope is not far off. It is close, it is real, and it is already on its way.
In Your steady, joyful, faithful name, amen.